Chapter 1

Patients first

People often say to me that I have coped with my situation
with bravery and an astonishing amount of grace, but it is not really true. It
is just that my fury has made me quiet.[1]

1.1
The existence of tick—or other vector—borne, Lyme-like illness endemic
to Australia is a controversial, polarising question. The committee considered evidence
provided by many qualified professionals articulating considered, plausible,
yet contradictory views. This evidence, presented over the course of two parts
to this inquiry, mirrored the tangled public discourse which has been going
around in circles for years: do pathogens responsible for Lyme disease exist in
Australia, which pathology results are reliable, who do we believe?

1.2
The committee heard many moving personal accounts from patients over the
course of this inquiry: eroding health, excruciating pain, complex
manifestations, desperation, exasperation—in a few cases, even death. Ordinary,
previously high-functioning members of the community rendered helpless
and exhibiting symptoms many say are consistent with tick-borne illness.
Years—sometimes decades—spent struggling just to get up and get on with life.
It is undeniable that people are suffering.

1.3
Given that the committee accepts that the human toll is real, it is
clearly necessary to go back to first principles—people are unwell, and they
must be helped. It is therefore the committee's primary objective, in this, its
final report on this inquiry, to put the patients first.

1.4
With this in mind, this report builds on the committee's interim report,
tabled in May 2016, and seeks to define why there is so much confusion and
disagreement. The committee hopes to establish how some progress can be made
by cutting through the controversy and identifying areas of agreement. Put
simply, why don't we know exactly what these patients have, and how do we help
people suffering from an unrecognised, unidentified, but real illness?

1.5
These are the questions at the core of this inquiry.

Inquiry background

1.6
The inquiry into emerging evidence of a tick-borne disease was first referred
to the committee on 12 November 2015, with a reporting date of 20 June 2016.[2]

1.7
The terms of reference for the inquiry were:

the prevalence and
geographic distribution of Lyme-like illness in Australia;

methods to reduce the stigma
associated with Lyme-like illness for patients, doctors and researchers;

the process for diagnosis of
patients with a Lyme-like illness, with a specific focus on the laboratory
testing procedures and associated quality assurance processes, including
recognition of accredited international laboratory testing;

evidence of investments in
contemporary research into Australian pathogens specifically acquired through
the bite of a tick and including other potential vectors;

potential investment into
research to discover unique local causative agents causing a growing number of
Australians debilitating illness;

the signs and symptoms
Australians with Lyme-like illness are enduring, and the treatment they receive
from medical professionals; and

1.8
Due to the federal election, however, the inquiry lapsed at the
dissolution of the Senate on 9 May 2016, by which time the committee had held
three hearings, in Perth, Brisbane and Canberra. Given the large volume of evidence
received, the committee tabled a comprehensive interim report on 4 May
2016, just prior to the dissolution of the Senate.[4]

Interim report

1.9
The committee's interim report was a wide-ranging analysis of the
evidence presented, and recognised that there is considerable debate in
Australia and internationally about what constitutes Lyme disease and Lyme-like
illness.

1.10
A large number of submissions were made by individuals detailing their
personal experience, or that of others close to them. Many submissions were
also received from doctors treating patients and researchers looking at
tick-borne pathogens. The report detailed this experience, the trajectory of
illness, access to medical treatment, and, in some cases, journey to recovery. For
clarity, patients were divided into four clear groups:

those who acquired and were diagnosed with classical Lyme disease
in an endemic area overseas;

those who acquired their illness overseas but weren't diagnosed;

those who became ill following a tick or other insect bite in
Australia; and

those who have experienced a long-term chronic illness in
Australia and may or may not have been bitten by a tick or other insect.[5]

1.11
The committee noted the weight of evidence on the relationship between
tick bites and people becoming ill.

1.12
The committee was concerned by reports of stigma attached to Lyme-like
illness and the treatment of those patients potentially suffering the illness,
and noted that more could be done to educate the public and medical
professionals about the risk of tick bites and tick-borne illnesses in
Australia, as well as classical Lyme disease acquired overseas.[6]

1.13
The committee also looked at diagnostic testing processes for Lyme
disease and the recommended protocol for laboratory testing of patients with
suspected Lyme disease. Testing, evidence suggested, was at the centre of the
heated debate on whether or not Lyme disease itself can be contracted in Australia.
Discordant laboratory results between accredited laboratories in Australia and
non-accredited Australian and overseas laboratories, the committee concluded,
were the cause of considerable confusion and frustration for patients.[7]

1.14
Although the committee's interim report was comprehensive and examined
key evidence in detail, the committee identified a number of issues warranting further
investigation.

1.15
Three recommendations were made:

Recommendation 1

4.52 The committee recommends that the Community Affairs
References Committee continue its inquiry into this matter in the 45th
Parliament.

Recommendation 2

4.56 The committee recommends that the Department of Health
further develop education and awareness strategies for:

the public about the prevention of tick bites and seeking medical
attention; and

the medical profession about how to diagnose and treat classical
Lyme disease acquired overseas and known tick-borne illnesses acquired in
Australia.

Recommendation 3

4.58 The committee recommends that the Chief Medical Officer
continue to consult with the medical and patient communities through mechanisms
such as the Clinical Advisory Committee on Lyme Disease, and for the Department
of Health to continue to facilitate meetings with medical and patient representatives.[8]

Conduct of the inquiry

1.16
In light of the truncating effect the dissolution of Parliament had on
the committee's inquiry, on 13 September 2016 the Senate agreed
to re-adopt the inquiry with the same terms of reference and a reporting
date of 30 November 2016.[9]

1.17
The committee did not call for further evidence upon re-adoption of this
inquiry, having already received and considered over 1200 submissions prior to
tabling its interim report. The committee did, however, hold an additional
public hearing on 2 November 2016, in Sydney.

Structure of the report

1.18
This report is divided into three chapters:

Chapter 1 provides a background to the committee's inquiry
and overview of evidence considered by the committee in its interim report.

Chapter 2 looks at diagnostic testing processes for Lyme
disease, with the objective of establishing why these processes and test
results are so controversial.

Chapter 3 examines treatment options available for
patients suffering Lyme-like illness. The chapter examines the evidence
around non-mainstream treatment, the position Australia's medical authorities
take on such treatment, and how the existing impasse might be breached.

Acknowledgements

1.19
The committee thanks witnesses and submitters for their engagement with
this inquiry, and recognises that a number of witnesses attended hearings at
short notice on more than one occasion. The committee thanks them for their
time, professionalism and evident commitment to acting in the best interests of
the community.

1.20
The committee also extends particular gratitude and recognition to the
individuals who came forward to relate their difficult personal experiences.
The committee was deeply moved by these accounts, and by the patients'
determination in having their voices heard and contributing in a positive way
to the wider community's understanding of tick-borne disease.